None listed
Conditions
Brief summary
Cystic Fibrosis (CF) is a chronic, life limiting condition, diagnosed usually at birth and is an autosomal recessive disease. Recent studies have indicated many adults with CF have strong beliefs that exercise may be equal or superior to other traditional forms of airway clearance as the mainstay for treatment. A lack of exercise in a daily regimen for an individual with CF has been associated with increased hospitalisations, poorer health outcomes including decline in lung function and decreased quality of life. There are many barriers to exercise for individuals with CF, some of these being concern over infection control, either using exercise facilities that others with CF may be attending, or other individuals in the general public who may still attend these facilities when they are unwell and increase the risk of cross infection. Beam (www.beamfeelgood.com) is a website that has been developed specifically for individuals with CF, to promote physical activity and movement in a safe setting. This study will review the impact of participating in the exercise sessions available on Beam and participating in a live clinical portal with a treating physiotherapist, to determine if there is an improvement in physical activity and wellness outcomes.
Interventions
Virtual group sessions will be scheduled 2-3 times a week; participants will be able to login to the group through the Beam site and these sessions will be facilitated by the treating physiotherapist.
Virtual group sessions will include education and completing one or more of the on-demand exercise routines that are available on the Beam Feel Good website, these classes will have up to 10 participants attending, including one physiotherapist.
The education sessions included in these virtual clas
Virtual group sessions will be scheduled 2-3 times a week; participants will be able to login to the group through the Beam site and these sessions will be facilitated by the treating physiotherapist. Virtual group sessions will include education and completing one or more of the on-demand exercise routines that are available on the Beam Feel Good website, these classes will have up to 10 participants attending, including one physiotherapist. The education sessions included in these virtual classes will be led by the physiotherapist and will include focus on techniques and education already provided in routine clinical care, to enhance the session for the participants, this will include methods of combining airway clearance techniques with exercise, and education around self-care and injury prevention/management. Participants will have access to the website 24/7 and able to explore the resources available to them over the 10 week intervention period. Safety protocols will be in place if exercise is being undertaken by participants. All participants will have knowledge of the BORG and RPE (rate of perceived exertion scales) and they will be asked to enter these in the chat facility at the beginning and end of each session, they also have personal SpO2 monitors and heart rate and oxygen levels will also be monitored during the exercise sessions. Buddy systems will be set up to ensure the physiotherapist has knowledge of contact details of someone other than the participant and knowledge of the geographical location of the participant (physical address) should there be an unexpected emergency during the session. Participants will login using their own login details which they will have completed through the Beam onboarding process. Participants will have full control over their level of involvement and identification, video on or off; and alias option for their username (the alias will be disclosed to the treating physiotherapist for safety purposes). There is no expectation of usage of the site, as this is a pilot trial we are wanting to explore the usage and then barriers and enablers. The exercise sessions will be guided by the group and individuals will be supported by the treating physiotherapist to ensure they are safe and suitable intensity for their health status. The exercise types will range from high intensity interval training, to yoga, to stretches; these will range in time from 25 minutes to 40 minutes and the types of activity will be determined by the exercise video resources already available on the website platform. Target intensity for training will be discussed with each participant based on BORG (aiming for 6/10) and heart rate. Web-portal analytics will be evaluated to review usage and adherence with exercise sessions.
Sponsors
Royal Hobart Hospital
Study design
Allocation
Non-randomised trial
Intervention model
Single group
Primary purpose
Educational / counselling / training
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
16 Years to 65 Years
Healthy volunteers
No
Inclusion criteria
Confirmed diagnosis of Cystic Fibrosis Receiving care from the Tasmanian Adult Cystic Fibrosis Unit A current financial member of Cystic Fibrosis Tasmania Able to provide informed consent Able to access the internet via a computer
Exclusion criteria
Presence of a severe comorbidity limiting mobilisation or physical activity. Previous lung transplantation, pregnancy and other complications of CF that may be considered a precaution - will need individual consultation with treating team to be safely included.
Outcome results
None listed